Tag Archives: seizures

A Body Bound by a Brain #2

You can feel it, when you’re right there. A quiet rumble at first, but within a blink of an eye, your world is shaking. It’s like time stands still, every second feels like a minute; and then, if you’re lucky, … Continue reading

Posted in Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, seizures in Rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 5 Comments

It Will be OK

I’m looking at my right hand. There’s a two inch scar, now, down the thumb side, where they cut in and took a bone out. Oh, they explained the whole procedure, what they didn’t say is “it will look different. … Continue reading

Posted in Rett Syndrome | Tagged , , , , | 1 Comment

Symptoms of Rett Syndrome, Katie style.

Here’s a list of SOME of the symptoms of Rett Syndrome, taken from the Mayo Clinic Website Slowed growth. Brain growth slows after birth. Smaller than normal head size is usually the first sign that a child has Rett syndrome. … Continue reading

Posted in Rett Syndrome | Tagged , , , , , , , , , , , , , | 1 Comment